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Old 04-20-2010, 06:18 PM   #1
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Exhaustion

Lately more than ever I am feeling more and more tired I have no energy and I'm starting to feel like more of a burden to my husband,I've noticed lately when he has to do a chore for me he makes these noises like why can't you do it.This isn't something that is new when we go to the movies and I ask him to let me out at the door he gets upset,so most of the time I just choose to stay home I don't know if he has become embarassed or just tired of this whole situation.Everyday I'm so tired or weak I have no energy so imagine trying to take care of a 7 year old and get him ready for school.After I get him ready I'm done I have no more energy,housework has become impossible now.I don't know what to do I usually sacrifice doing something for myself to try and get housework done to put less stress on husband when he comes home from work.I believe this sickness is progressing.I fear this will end my relationship if I continue to get worst.All I wanna do is lay down I don't have the energy to do anything productive around the house.I know I have to be depressed and just down right tired.Thanks for allowing me a place to vent my insecurities and my fears.

 
Old 04-21-2010, 10:29 AM   #2
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Re: Exhaustion

Skyla,

My heart goes out to you. You are right, being afraid that this disease could end your relationship is a very real fear. I have had it and still do at times. I don't know anything about your financial and insurance situation, but I do think you would benefit from seeing a counselor. I have been seeing one for the past two years, he is actually a family therapist. He is doing a great job for me. Once in a while he will have me bring in my husband, a disease like MD, will bring a lot of strain on any relationship, and communication becomes more important than ever. A family therapist may be able to help you out.

I am getting help with my own depression issues as well as my insecurities about my husband etc.

If you cannot afford a therapist or if your insurance does not cover, look into a pastor or a priest if you belong to a church. They also have training in listening and counseling people. My brother and sister in law have benefited greatly from that.

I am also very sorry about the fatigue. I don't have much advise to offer you there, other than hang in there.

P

 
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Old 04-21-2010, 10:51 AM   #3
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Re: Exhaustion

Hey skyla,

Unfortunately there's no miracle cure for the fatigue. Some people swear by vitamins or supplements. I take CoQ10 in large doses. I'm doing this for my MD doctor more than anything as kind of a guinea pig. At best, it takes the edge off of the fatigue. But I have taken it faithfully now for 2 years. 400mg/day. Days that I go out I take 1000mg-1200mg. But it's expensive. I spend almost $1 day for 400mgs.

I understand feeling like a burden! My wife gives me the "huff" and the "eye roll" all the time even though she always scolds me "just ask for help, no one minds helping!" And yes, it does make one worry about the relationship. Fortunately in my case, we've been married 24 years and get along well. We're good friends. There is an issue I've mentioned before; romance. It's becoming a memory. It's too demanding physically and I don't feel very attractive so I feel guilty expecting any romance. We do talk about it a bit. It seems it's harder on me than her. We are both 49.

I'm fortunate my 2 girls are grown up at 18 & 21. I couldn't imagine taking care of an active small child. As always this is the place to vent. I probably would be seeing someone for help if it weren't for my "Healthboard friends".

Mark

 
Old 04-22-2010, 04:48 AM   #4
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Re: Exhaustion

I think every one of us here can relate to the frustrations you described. I know I sure have!!

I am very, very fortunate that I have been married for almost 17 years and my husband has watched my decline, so he's very understanding. As recently as 10 years ago, we had no idea there was anything wrong with me. Sure, we knew I was a "weakling" but I could still do everything I wanted. As time has worn on, he's watched me fall, have trouble doing basic things that were never a problem before, and so on and so on.

I consider myself very fortunate that he "gets" it because I know a lot of people not only suffer from this disease, but also suffer from family that just doesn't understand.

As far as the exhaustion, I have found that I have to limit my activities. I equate my energy to money -- I have roughly $100 worth of energy every day and EVERY activity depletes that amount. For example, taking my shower and getting dressed probably spends $15 - $20 worth of that $100 I have available. And when that $100 is gone, I totally collapse, so I need to leave enough to finish my activity and get into bed at night.

It helps me "plan" my days somewhat and figure out what I can and cannot do.

 
Old 04-22-2010, 07:22 AM   #5
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Re: Exhaustion

Kathy,

Great analogy! Only some days I wake up and feel like I only have 15 cents and an empty gum wrapper in my pockets!

Mark

 
Old 04-22-2010, 08:23 AM   #6
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Re: Exhaustion

Mark --

I hear you! I have found that since I've been on breathing equipment, I usually wake up feeling reasonably good and typically have about the same amount of energy. I think my quality of sleep is improving, thus I'm getting more refreshed at night than before.

But it's a constant struggle to plan my activities so as not to drain that energy account. Like today -- my sister was passing through and stopped by to visit. As she was leaving, I made the decision NOT to walk her out and go down my ramp. I know that I will need to walk down/up the ramp twice later today, plus I need to do laundry AND get my own lunch. If I had walked down that ramp with her this morning, knowing I need to do it twice later, I probably would have run out of my energy BEFORE I finished what I need to do today. So, I stood at the top and said goodbye to her from there rather than walking down.

And she understood that.

I do this every day. Think about what I need to do, decide HOW to do it and figure out IF I'll have enough in my energy account to accomplish it. I guess I've been dealing with this long enough that I have a pretty good idea of how much an activity will drain me and can USUALLY plan for it.

And if I don't have anything I NEED to do, I tend to rest ALOT to conserve the energy I have in case I need it for something unexpected later in the day.

 
Old 04-22-2010, 10:02 AM   #7
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Re: Exhaustion

Hi guys,

I am not sure if I am atypical, as I rarely have issues with my energy levels. I do take a lot of supplements, and exercise a lot. I have found that the more I exercise the more energy I have. I read somewhere that my type LGMD 2I actually responds well to exercise, so I am doing everything I can to stay active.

My energy levels really correspond with how depressed I am. When I have one of my down periods, I can spend days on the couch, but when I feel good(ish) mentally, I can keep going all day.

It is kind of strange how this affects us all differently!

P

 
Old 04-22-2010, 10:19 AM   #8
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Re: Exhaustion

Fatigue and energy levels have been a HUGE problem for me since way before I was diagnosed. I always knew SOMETHING was odd, but always chalked it up to it was just the way it was.

I have what they call "exercise intolerance." I cannot physically handle any exercise whatsoever. Even when I used to try to take walks with my husband, I could usually make the walk, but I would collapse when we got home, totally exhausted and in pain. Just from walking around the block.

Last edited by Madalot; 04-22-2010 at 10:21 AM. Reason: Changed Wording

 
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